Adjusting to a Type 1 diabetes diagnosis is easier with support

Until a few months ago, I didn’t know that 1.25 million Americans have type 1 diabetes, formerly known as juvenile diabetes, and that approximately 40,000 people will be newly diagnosed each year in the United States. I also didn’t realize that my child would be one of them, or that our lives would change forever with his Type 1 Diabetes diagnosis.

It began with my son complaining of not feeling well. I did not recognize that my son had the classic signs of type 1 diabetes:

• Excessive thirst / excessive hunger

• Frequent urination

• Unexplained weight loss

• Blurry vision

• Extreme fatigue

• Numbness or tingling in limbs

• Nausea/vomiting or stomach pains

• Breath that smells sweet or acidic (caused by ketones)

Many of these symptoms seemed easy to dismiss. What growing teenager isn’t always drinking the entire carton of juice or hungry all the time? Before long though, we both knew in our gut something was wrong. He was diagnosed with type 1 diabetes when we went in for a routine visit to his health care provider. They hospitalized him immediately in the intensive care unit with a life-threatening complication called diabetic ketoacidosis. Fortunately, my son recovered quickly, and we began the roller coaster ride of learning how to live with and manage a new chronic disease.

It was a shocking and frightening diagnosis. My son was active, fit and always a healthy child. Type 1 diabetes is an equal opportunity disease — it can happen to anyone at any time. While many people develop type 1 diabetes in early childhood, teenagers and adults also can be diagnosed later. According to the Centers for Disease Control, type 1 diabetes is thought to have genetic or environmental triggers, which means that diet and lifestyle behaviors do not cause type 1 diabetes.

Diabetics must work closely with their doctors to balance insulin needs with learning and practicing healthy habits. This is an ongoing process. Type 1 diabetics can get tips and tools to support these new and often complicated habits by participating in diabetes self-management education. They also need to be careful to protect themselves from illness such as influenza by getting annual flu shots.

Unlike type 2 diabetes, which accounts for most cases of diabetes in the United States, type 1 diabetes cannot be prevented and there is no known cure. People that have type 1 diabetes need to take supplemental insulin for the rest of their lives. What they have in common with type 2 diabetics is that they also need to live a healthy lifestyle, eat nutritiously, exercise, get proper rest, practice good oral hygiene, monitor blood sugar levels, and get regular check-ups from a health care provider.

When diabetes is left untreated or improperly managed, there can be serious complications, including imbalances in levels of blood sugar. When blood sugar is high for prolonged periods of time, it can lead to long-term health complications such as nerve damage, blindness, kidney damage, and cardiovascular disease. Low blood sugar can have immediate and dangerous effects including loss of consciousness, accidents, injury, and death if glucose is not readily administered.

It is important for people with diabetes to consider sharing their condition with their families, friends, teachers, and employers. In particular, teaching loved ones about the symptoms of hypoglycemia (low blood sugar) and what to do to respond to a diabetic crisis could save a life. My son now always carries his insulin, supplies, and rescue glucose in a small red backpack wherever he goes, and we make sure we have sugary snacks and extra insulin supplies at home and while traveling. Some people wear diabetic alert jewelry and most phones include emergency health information that first responders can quickly access. Quick and appropriate treatment can make the difference between life and death.

It’s also important to recognize that diabetes, whether type 1 or type 2, is a costly disease. Insulin, syringes, testing supplies, health-care visits, and fresh, healthy, nutritious foods are expensive, and many people cannot afford or access what they need. This creates health disparities in our community among racial, ethnic, geographic, and socioeconomic groups that can lead to dangerous health outcomes and dire long-term public health consequences.

Children and adults with type 1 diabetes can live a normal life span and can do anything they want to do, but chronic health conditions can be stressful, lonely, and life changing. As a parent, there is nothing scarier than worrying about your child’s health and well-being. But there are resources and support available. Connecting with others with similar experiences whether in person or online can help reduce isolation, increase resiliency, and inspire hope.

Sharing our family experiences with others in our community, joining support groups, and connecting with organizations such as the Juvenile Diabetes Research Foundation and American Diabetes Association, has made a difference for my family. This spring, my son and I will be doing a charity fun run together to raise awareness, joining others that have learned that you can live a normal, healthy, active life and thrive with chronic conditions like Type 1 diabetes.